Learning objectives

1. To become familiar with the many ways of knowing and the importance of understanding lived experience.

2. To develop an understanding of the factors shaping the changing terminology for distress and the socio-political factors shaping these changes.

The quotes above from Ella and John, both names self-chosen pseudonyms, add meaning to the Higher Education Authority’s statistics. They help us to move beyond percentage points or trends, important as these are, and into the minds, thoughts, feelings, and experiences of students who, in Ella’s case at least, are represented in these non-progression statistics. Ella and John’s stories open up our understanding of the experience of dropout and the array of utterly understandable factors that result in non-progression. Factors, that upon learning them, we too can imagine how, if faced with such difficult thoughts, feelings and experiences, we might have followed a similar path. Their stories allow us to learn, not only with our minds but with our spirits, the meaning of experiences. In short, they allow us to understand. As Munhall suggests, “isn’t that what we all wish for – to be understood?” (Munhall, 1994, p. 170).

This book is all about understanding. Its aim is to offer an insight into the lived experience of Irish university students with mental health difficulties so that readers might better be able to say “I understand”. It offers an understanding of the experiences of students, their routes to higher education, the barriers they face, and the assumptions underpinning their presence on campus. It offers valuable insights into diagnosis, support, and the efforts students invest in managing their mental health so that they may complete their university education. This chapter sets the scene for understanding. It examines how we understand, the words with which we create and name this understanding, and why understanding is important in the first place. In doing so, this chapter lays important groundwork for the insights to come. It begins with a description of why I wrote this book and, in particular, sought to focus on understanding rather than describing or explaining. From here on I, as author and researcher, take a step back and allow the lived experiences themselves to come to the fore. The chapter concludes with consideration of the terminology that will be used throughout to refer to a phenomenon that can variously be described as illness, disorder, or distress.

Researching lived experience

As an undergraduate student I learned that one in four adults will experience a mental health difficulty at any one point in time (Ginn and Horder, 2012). I read studies that suggested that 75 per cent of adults with a mental health difficulty can trace its origin back to between the ages of 18 and 25 (Kessler et al., 2005) – a time when many young people are engaged in higher education. I was taught to statistically analyse a whole host of psychological phenomena – from anxiety to resilience – using a range of sophisticated measures and techniques, and look with confidence to the score at the end of the measure for insight. Yet, beyond my studies I had the privilege of listening to the rich and deeply nuanced stories of young people with lived experience of distress. Through my work as a founding member of Jigsaw, Ireland’s National Centre for Youth Mental Health, I had the privilege of bearing witness to stories of fear, hurt, shame, and disappointment. I learned how distress manifests and grows in climates of poverty, unrelenting competition and expectations, loneliness, and/or neglect. I heard stories of hopelessness and strength; despair and indomitable courage; desperation and wisdom, that offered insight, depth, clarity, and understanding. Yet, I found little more than snippets of these in the academic papers and textbooks that filled the university library.

I realised that we live in a society that prizes the “self-correcting features of modern science” (US Department of Health and Human Services, 2001) over the “swampy lowlands of human experience” (Barker, Campbell and Davidson, 1999). Stories and lived experiences are all too often posited as “strictly speaking, not science” (Jensen and Redman, 2024) and therefore, not valuable. However, stories, for me, are immensely valuable. They offer a path to understanding that we forsake for the twin illusions of certainty and objectivity. Objectivity is a subjective concept and good science relies on a range of perspectives from a diverse community (Oreskes, 2021). It requires both science and stories.

This is particularly true of mental health where, for too long, the voices of those with lived experience have been disregarded, even considered unreliable, unavailing, and untrustworthy. This has resulted in significant epistemic injustice where the testimony and interpretations of people with lived experience of distress is considered lacking in credibility, and they are actively undermined in their capacity as knowers and contributors to their own diagnosis and response (Crichton, Carel, and Kidd, 2017). Instead, as Chapter 2 will explore, we have relied heavily in recent decades, on a medico-scientific approach to distress. Trying to understand the complexity of human distress from this medico-scientific perspective alone is, as Boss suggests, akin to trying to understand a Picasso painting in terms of “material objects whose length and breadth could be measured, whose weight could be determined, and whose substance could be analysed chemically” (Boss, 1979, p. 100). These data “would tell us nothing about what makes these paintings what they are, their character as works of art is not even touched” (Boss, 1979, p. 100). This approach, as a group of 29 psychiatrists (Bracken et al., 2012, p. 432) put it, “has not served psychiatry well”. Instead they call for greater emphasis on understanding and honouring lived experience in mental health.

My aspiration in conducting the research that forms the basis of this book was to neither explain nor analyse but rather to understand. It was to reinstate the value of understanding by demonstrating, not just its transformative potential, but its trustworthiness (see Appendix) as a form of knowledge upon which to build policy and practice. Following Bracken and colleagues above, this research sought to actively engage with the complex nature of mental health and distress. It sought to honour people’s lived experiences as a valuable, indeed essential, form of knowledge. More specifically, I sought to understand the nature and meaning of higher education for students with mental health difficulties.

A note on terminology

The language adopted to convey the phenomenon of distress has evolved throughout history in line with popular conceptualisations. From “lunacy” (reflecting early beliefs about the pernicious influences of the moon) to “melancholia” (“black bile”); from madness (the word “mad” introduced to replace the Old English word “wod” which means demonically possessed or frenzied) to mental illness; the choice and appropriateness of language related to distress depends more on the dominant perspective of the time than the experience itself.

The last 60 years alone have seen a largely interchangeable array of terms from mental illness which, following a 1960s critique of the biological basis for distress (Foucault, 1961; Goffman, 1961; 1963; Laing, 1960; Szasz, 1960), gave way to disorder, which by the early twenty-first century had itself given way to terms such as “mental health problem” or “mental health condition”. This alteration in terminology is seen in Ireland’s mental health policy – from the 1984 policy which catered for the “mentally ill” (Department of Health and Children, 1984) to the 2006 policy which primarily focused on people with “mental health problems” (Department of Health and Children, 2006) to the 2020 policy which further differentiates those with a “mental health difficulty” and those with “severe mental disorders” (Department of Health, 2020). However, as Beresford (2005) and others would argue, the replacement of terms such as “mental illness” and “pathology” with the more euphemistic “mental health” or “mental health difficulties” does little to change their origins, meanings, and legal basis. The term mental illness, in its true or euphemistic form, clearly suggests an understanding of these matters as related to health and sickness. These experiences, as explored in Chapter 2, will be predisposed to a medical interpretation.

This book, in line with the principles of hermeneutic phenomenology (described in Appendix), seeks to remain open to the phenomenon. As such, it aspires to avoid familiar terminology and assumptions of illness or disorder and remain as close to the phenomenon as it is lived as possible. Accordingly, the term distress will be used in this book to describe experiences that others might describe as mental illness or mental health difficulties. The one thing most people can agree on in relation to these experiences is that they can be distressing. The term distress will be interchanged with “mental health difficulty”, “mental health”, or “mental distress”, if only for variety. Where possible or appropriate, the students’ own choice of terminology will always take precedence. Interestingly, the most commonly used term by those who shared their experiences of distress was simply “it”. This term will be used, both in respect for the student’s own conceptualisation and in recognition that “it” is a uniquely personal experience perhaps beyond explanation, generalisation, and definition on a grand scale.

The term “university” will be used to refer to all Higher Education Institutions (HEIs) funded by Ireland’s Department of Further and Higher Education, Research, Innovation and Science (DFHERIS) via the Higher Education Authority. These include universities, technological universities, and other institutions that receive public funding. Students who participated in this research came from across the higher education sector, with the majority attending any one of Ireland’s seven universities.